Are there any studies that include bedbound CFS patiënts playing tennis within 6 months?

Hello everyone,


I'm doing some research which may or may not lead to writing an article.
When reading old newspaper articles from The Netherlands, I came across a 2003 piece featuring Judith Prins and Gijs Bleijenberg.

Apart from the usual tripe, they make the claim that due to their CBT, patients that were mostly bedridden for years, and only did the "highly necessary" things, like washing and dressing, themselves, were able to go shopping a couple of times a week, go to the tennis court instead of walking, read the newspaper or a book, go on a visit, and eventually play tennis for 45 minutes a couple of times a week, and start a new education. And this miraculous result was apparently achieved regularly. Within six months. By among other things taking away their beds if they were in the living room and making them move around doing GET (which in The Netherlands is part of CBT).

(Apparently at the time I have missed the hordes of recovered tennis enthusiasts myself. They mention tennis three times in this short bit btw, a really odd fixation.)

While I'm quite sure I know the answer , I wanted to run this by you, as a group that's familiar with a lot of the research papers, including the Wesseley School produced journal filler.

Are there any "chronic fatigue=chronic fatigue syndrome" bps style publications in journals that claim such extraordinary concrete results? I know they're usually vague, based on subjective outcomes and "perception" and such; Prins and Bleijenberg try to throw a smokescreen over non-recovery in the bit immediately preceding this part.

I also know they usually seem to steer clear of severely ill patients for their research papers. Regarding those, I only know about the FINE trial that included some bedridden and home-bound patients, but apart from that I'm not aware of any others.

I also know that this is actually being done to severely ill people in practice, but I've never read anything "official" about it.



Apart from my question and off topic: thank you all for your contributions to this forum. I'm reading it often, and find myself informed, amused and at times comforted (because I feel less isolated). It's also a goldmine for research purposes. I'm really glad it exists, I wish it did 20 years ago. May this find you all on a relatively good day.

 

I'm not aware of any studies showing such dramatic improvements within six months. I suspect these stories are embellishments based on patients recovering for reasons unrelated to treatment. What studies show is that these treatments have little to no effect on employment and objectively measured activity levels. In response to this, proponents of CBT/GET have begun avoiding using these outcomes.

There's a critical review of GET and work outcomes. If a treatment consistently helped patients so much that they could begin to play tennis there would presumably be some improvement in ability to work as well.
https://pubmed.ncbi.nlm.nih.gov/32568149/

 

Hi @Arvo welcome to the forum!

I've heard of several tennis players who contracted EBV/glandular fever and had to retire from their professional careers because of ongoing illness.

Sweden's Robin Soderling comes to mind.

 

Washing and dressing are not, for those of a certain lifestyle (e.g. people without any energy to waste on frivolous socially desirable activities, i.e. things that others, whom I never see, would prefer I did), 'highly necessary things'. To think they are suggests a lack of appreciation of what is highly necessary for life.

I need water, toileting (as the alternative would be much more work) and the ability to 'source' and prepare food.

Everything else is a 'luxury', ones that a lot of the time...blah, blah, blah.

(nice to have, fairly important, but not, 'highly necessary'.)

....and no I have no examples for you

 

Recovery Norway and advocates of the Lightning Process have shared similar stories in the press and on social media, but I am not aware that there are such studies. In fact, this is the crux of the matter -- claims about the Lightning Process (and other quack therapies for ME/CFS) are scientifically unproven.

However, even though GET trials other than FINE didn't include bedbound patients, the way BPS proponents have reported their results -- especially for PACE -- unequivocally shows their attempts at depicting it as an intervention that enables recovery (under their own twisted definition of "recovery"). The infamous persona of Julie and her activity timetable invented by the GETSET investigators is a clear example.

ETA: for any such recovery stories, there are contradicting stories about the polar opposite, i.e. forced submission of severe patients to GET or physical activity programmes causing further deterioration. Karina Hansen comes to mind, or Ean Proctor in the UK, but these publicized examples remain the tip of the iceberg as we do not have reports for most patients who become severe from GET.

 

There was someone a few years back selling their own ‘miracle cure’ whose life was centred around their local tennis club. They may have been or have become a tennis coach.

I can’t remember if it was one if those dreaded magazine or popular newspaper articles that advocated hard work and exercise to cure ME or if it was something more organised.

[added several days later - I have not managed to locate the original article(s) referred to.]

 

Mario Ancic ... I think there was someone else, too. Actually, I believe I saw something recently along the lines of Soderling's retirement having actually been due to depression.

 

On other forums, I have come across stories of people who were bedridden then became well and are now very athletic. Most, if not all of them had been ill with EBV. I believe it is possible to be seriously ill with EBV but not develop ME, then the EBV resolves after a few years.

Giardia is named as a cause of ME but a close friend was fairly ill (not bedbound but had to give up work) for a few years then went back to normal health.

Prolonged recovery after an infection can take a few years but normal health returns.

The question is whether these people had ME (not whether they were seriously ill, they were).

My own view is that ME is like MS, if you live within your energy envelope life can seem normal but if you go over it the ME will come back with force.

Exercise makes us sick so exercise cannot treat the disease.

 

Thank you all for your replies.

For me this confirms what I already was pretty sure of: that there is no official research claiming such spectacular and unbelievable results. As most of you know, Blijenberg & co insist that CBT is a cure (the small print remark that patients should give a new interpretation to the meaning of that word and lower their expectations of what is actually possible is optional) although recently it can be watered down somewhat to CBT having a "positive effect". In a 2017 article no-one is playing tennis anymore, they're currently trying to rebrand themselves as being heavily into bio research all along, implying that regarding to that, with their 30 years of experience, the Nijmegen CF expertise centre "belongs to the premier league". (They somehow forget to add that those many research papers in the Lancet and BMJ that they refer to are mostly -or even all- BPSbased psych pieces that lead to a conclusion that their product, CBT is the answer, although of course there should be more research towards that to see if that's so. )


My main focus wasn't the tennis in itself btw (but thanks for the interesting bit on several tennis players), but the preposterous claim that bedbound ME/CFS patients (in 16 talk-sessions) are able to repeatingly do such vigorous and longlasting activities, or just be able to do that at all. The weird forcus on tennis, and what it entails (actively running and swatting a ball for 45 minutes) just adds an extra layer of ridiculousness to it.

 

Argh, I accidentally deleted the whole bit I typed. Well, let's try that again.

Yes, I completely agree. That's why I used the quotation marks. Being washed is important, and can be simply heavenly after prolonged periods of non-washing, but it's not a necessity. Being dressed isn't one by a long shot.

I looked it up, another acceptable translation is absolutely necessary. It this context it was used to say that the bedbound examples only did minimal things while everyone else did the rest, implying that they were pampered of course. (As they could be out & about playing tennis with a little imput from their CBT rescuers).



@cassava7 I reckon Norway could have the same problem as The Netherlands (& flemmish-speaking Belgium): living under a bell jar of language. Yes, the situation in the UK is absolutely awful, but imagine Shape, Chalder & co operating in a place where hardly anyone in the world speaks the local language. In english there is a huge number of people, including medical and psychological experts, who can read and hear what is said. So they have to be somewhat careful of what they say in public. Here, in dutch, the Wesseley School bunch had and has free range to say just about anything unchallenged.* Frankly, I think a lot of english speaking people would be rather shocked about what is actually said here in the press by so-called "experts", and how ME/CFS has been portrayed. Just last week I found a particularly nasty cartoon about ME from 1991, which I doubt would ever have been printed in an english language newspaper given it's misogyny and crassness, even then.

*(Which is also evident recently in how we talk about COVID-19: until july/august '20 we had an open policy of herd immunity -denied in name only after a backlash- , the building of immunity through infections is still openly approved and applied. Masks were discouraged and deemed unsafe and uneffective, and are, after a short inclusion for public buildings dec-march, not part of our basic measures, it was called a silver lining that the virus only "reaped" the elderly and ppl with underlying conditions, etc.)

 

Yes!

Trouw, 24th of april 2003. The link: Vergelijk jezelf niet met vroeger | Trouw

I can't seem to get it through the translation site. So I'll add a google translation:



Don't compare yourself to the past

There is now an effective therapy for chronic fatigue syndrome (formerly ME): cognitive behavioral therapy. But patients are not entirely happy with it. They fear that the treatment success will be used to close the road to disability benefits.

Wybo AlgraApril 24, 2003, 0:00

Not even thirty, had the flu two years ago, and still tired. Not just tired, but already exhausted when you get up, every day. Working a few hours a day is actually too much, a visit to friends will take days off. A search of various medical specialists and alternative healers has yielded nothing.

Such histories - and even worse - are daily fare in the Nijmegen knowledge center for people with chronic fatigue syndrome (CFS). Gone are the days when this disease was considered a fad. More and more doctors are taking the complaints of the estimated 30,000 to 35,000 patients seriously. Unfortunately, that doesn't mean they can't do anything about it. 'Nijmegen' - a concept among CFS patients - does offer an effective treatment method: cognitive behavioral therapy. But due to the large influx, the practitioners now have to limit themselves to patients in the region. And there are still waiting lists.

It is high time there were more knowledge centers for CFS, said Gijs Bleijenberg in his inaugural lecture a few months ago. According to Bleijenberg, professor of 'psychological aspects of chronic fatigue' in Nijmegen, cognitive behavioral therapy works in three quarters of CFS patients. A very favorable success rate, compared with an earlier publication by Bleijenberg and clinical psychologist Judith Prins, in the medical journal The Lancet. Then, in 2001, only one in three patients appeared to be more or less cured after the treatment.

They have not been idle, that is how the Nijmegen researchers explain the difference. Prins, who will soon be awarded a doctorate for the treatment: "We have found out that there are different groups of patients that we have to treat in different ways." For the time being, the Nijmegen practitioners distinguish three categories. Cognitive behavioral therapy does not work at all for one group: the many patients who are still fighting for disability benefits.

These patients, explains Prins, are faced with medical examiners who think that they are not so ill at all, and that they can still work quite well. Prins: “In the first place, patients want to convince the medical examiner of the seriousness of their complaints. It turns out that this does not go hand in hand with treatment that is aimed at recovery.” Returning to work is the last thing these patients are doing, and that is often one of the goals of the treatment.

Furthermore, the practitioners now distinguish between the CFS patients who want to be active against the rocks, and the patients who rest as much as possible, because they think that 'otherwise it will only get worse'. These two groups each need their own approach. Because that too is a prejudice, Bleijenberg explains: that all CFS patients prefer to lie on the couch all day. “Three-quarters of patients do everything they can if they can. But don't ask at what cost."

For example, a visit to family or friends might not hurt an otherwise quiet day. But if that visit runs out, or there are more people because of a birthday, then it will be more of a hit. And even if someone has already been working before that, there is a good chance that he or she will call in sick the next day and stay in bed. “Even these 'active' patients still do very little in the eyes of others,” emphasizes Bleijenberg. "But that little is already more than is good for them."

The people treated in Nijmegen have been ill for an average of 5.5 years. Their treatment program consists of sixteen interviews, individually or in groups, spread over six months. First they set goals together with their therapist, such as working more, exercising, and doing the household themselves.

For the 'active' CFS patient, then slowing down is the motto, at least initially. He (or, more often, she) keeps a diary to discover which days the exhaustion is the worst, and what it is related to. The next step is to spread out activities. Working one day, visiting family the next; not all the ironing at once, but in portions of fifteen minutes.

When the days and weeks are better structured, the building begins. For example, patients start with ten minutes of walking twice a day and increase that by five minutes each week. Those who want to work more gradually build up the number of working hours. As a result, it is often possible to achieve the set goals within six months. Are they completely cured? "We always say: stop comparing yourself to the past," says Judith Prins. ,“A lot can change in five years, everyone gets older. It's about what people want now."

'Passive' CFS patients, in the most extreme case, have spent nearly all day in bed for years. They only do the essentials, such as washing and dressing themselves. For everything else they have called in auxiliary troops. Nevertheless, these patients can also come a long way in six months, experience Prins and Bleijenberg. Starting an education to get back to work, playing tennis again - such ambitious goals are no exception.

However, the first phase of the treatment is different from that of the more active patient. The initial 'slowing down' is skipped, so as not to confirm people's belief that any movement is bad for them. Instead, they need to get moving right away: for example, walk for a minute six times a day. The bed, which was in the living room, moves back to the bedroom. And gradually these previously bedridden patients do something more and more. A few times a week an errand in the corner store, every now and then to the tennis court instead of walking; read the newspaper or a book again and visit someone; and eventually play tennis for 45 minutes a few times a week and start with the new training.

Too good to be true? The ME Foundation, an interest group for CFS patients, fears so. Of course, any treatment that works is more than welcome. But the ME Foundation is not yet sure whether cognitive behavioral therapy is such a blessing for all patients. Mary Rietdijk: ,,We hear from patients that strict selection is made in advance in Nijmegen. People who are involved in benefit procedures are not allowed to participate, and neither are very serious patients. That way, success is assured.”

Cognitive behavioral therapy is useful for some patient groups, the ME Foundation thinks. But for other patients, the treatment is asking too much: they are forced to go beyond their own limits, so that it only makes them sicker. Rietdijk: "We also experience that patients who do not successfully complete the treatment no longer receive benefits because they would hinder healing." It is precisely for the latter reason that the ME Foundation is adamantly against the standard referral for cognitive behavioral therapy, and against the obligation to undergo treatment on pain of loss of benefits - something that practitioners Bleijenberg and Prins will not advocate for either.

Gijs Bleijenberg meanwhile continues to work on the road. He believes that CFS patients should be able to receive cognitive behavioral therapy anywhere in the Netherlands. He has just received good news: he will receive a research budget to find out how the Nijmegen method can be implemented elsewhere, starting in East Gelderland.


End of article, but underneath the newspaper, notorious for being used by the dutch Wesseley School branch as a pr outlet, has added a small section asking for subsription. See if you can spot the irony, it's rather subtle.

"Just this… Because it is becoming increasingly difficult to uncover the truth, Trouw has invested heavily in investigative journalism in recent years. And with success: time and again, Trouw revealed abuses, such as the allowance affair at the tax authorities, the Panama papers or secret military deliveries by the Netherlands to Syrian rebels. With a subscription to Trouw you support this much-needed investigative journalism. In this way you counterbalance scandals and lies. And you can always determine your position well-founded. You already read Trouw for only 2,- a week."

 

Funny you should mention that, as their description in the newspaper sounded a bit like my own mono experience when I was 15. Stretcher in the living room for several weeks if I remember right, and it took a while to fully recover because I stayed fatigued (but months, not years, in my case dietary advice to unburden my liver for a while helped a lot).

Which would be ironic, as, like I just mentioned in this thread Cost-effectiveness of interventions for medically unexplained symptoms: A systematic review, 2018, Wortman et al | Science for ME (s4me.info), the Dutch Nijmegen group originally tried to keep EBV patients out of their research by setting the fatigue length at a year (while excluding additional criteria ) and Bleijenberg was, according to Van der Meer, originally added to the team to also keep regular fatigue out. (Presumably from burnout and depression and such.)

Indeed. Which makes the claim so utterly unbelievable and scandalous.

I really wish they would sprout bushes of zucchinis out of their forehead every time they lied. Then at least we could feed the world with soup.*


*diet permitting

 

Interesting that they are trying to understand their client group, but still get it so wrong. (What follows is for readers here preaching to the Choir, and is probably written as much for my own benefit, so I don’t necessary recommend people bother to expend energy reading it.)

In relation to the implication that anyone involved in claiming benefits is not going to progress because getting better will cost them money there are so many problems:

• Even if there is a correlation between willingness to participate in intervention and their benefits position, this does not indicate direction of causality, it is equally likely that those claiming benefit have more severe symptoms and consequently the likely energy and health costs of engaging in a contested treatment programme may be the determining factor in rejecting this approach.
• In many countries benefits agencies and insurance companies have tried to make engaging CBT and/or GET a necessary condition of receiving any financial payout, but there is no evidence that this has any impact on levels of unemployment or health, and lots of anecdotal evidence if this causing psychological and health related harms.
• Claiming benefits in the current climate of disbelief, added to by the unproved assertions put forward in this article, is so time consuming and stressful, that the addition of any contested interventions in an activity/energy limiting condition at best is setting people up for a fall.
• There is no published evidence that supports the suggestion that these intervention get people back to work or reduces benefits claims. In the UK there is even contrary evidence, in that those attending the national network of specialist ME services based on these interventions on average end up claiming more benefit and working less hours after these interventions.
• If financial considerations were a significant motivator for having ME, how does one explain that the vast majority of adults with ME are considerably financially worse off than before they had the condition? My own income, even without taking into account inflation, is between a quarter and a third of what it was before the onset of my ME some 25+ years ago.
• How does this explain fluctuating conditions, where people’s health can improve whilst on benefit but then deteriorate when they stop claiming benefits and undertake the higher levels of activity necessary for employment? My personal experience is that attempts to return to paid work, even if self employed so that pacing is an option, ultimately resulted in significant relapses, and after the last attempt I am now more disabled than any point in the previous 25+ years.
• The suggestion of secondary gains through the benefits system as well as making no financial sense, hardly explains why some one would chose to be bed bound for a minimal income, when this may cost them previously enjoyed and successful careers, any social life, the possibility of any romantic relationship and most friendships, the opportunity to engage in a social or previously enjoyed leisure activities. Given the choice between travelling to Tibet or Antarctica (both of which I have done, with ME, in periods of relative remission), or staying in bed all day, there is not doubt what most people would choose. Many people with ME have felt obliged to decide against having children, it is hard to see how gaining a minimal income on benefits is sufficient of itself to overcome what is generally regarded as a biological imperative.

There are so many other problems, from ‘washing and dressing themselves’ being in fact something the very severe aspire to do, from ‘calling in the auxiliary troops’ when some may go weeks without seeing anyone at all and subsist on eating cold food directly from a tin can. Even when they try to understand why some people conspicuously fail to benefit from these approaches they are getting it so wrong.

But also when people do actively engage with their interventions, is total overall activity levels ever measure (plot spoiler, the answer is no), are they ever followed up long term. When people engage with interventions they are told will make them better by apparent experts, they will give it their all, they will put it above other everyday activities, which when combined with a deliberate emphasis on activity reduction may give an impression of improvement in an energy limited condition. You take out the unpleasant symptoms resulting from PEM or poste exertional malaise, and release time/energy to increase the amount of the focused activity, eg arbitrary exercise targets, that can be undertaken. There is no independent evidence that this impacts on any underlying condition and the published research evidence indicates that there is no improvement on objective measures and that any subjectively reported benefits disappear relatively quickly. I would argue that the only benefit some people gain from

I would argue that the very title is an admission of failure. ‘Don’t compare yourself to the past’ is part of an attempt to redefine recovery, to justify interventions that invariably fail.

A few people experience spontaneous improvement, but we have no evidence that these interventions have any impact on that, and the suggestion that people are not improving because they chose not to ignores the fact that the vast majority of people are continuously exploring their current limits, even the very severe, and making the most of any improvement however small when it appears.

[added sorry, will have to come back later to correct typos.]

 

It's important to realise that that's not what they're doing. This article is basically a PR piece, a commercial for their "product" disguised as a news article. The pseudoscience the whole group produced, together with articles like these, are not meant to learn or inform, but to build a narrative on which they can build careers, status, grant applications and an income model, and possibly serve the interests of the insurance company and governments looking for benefit cuts.

They're not trying to understand anything, otherwise we wouldn't have this mess. Truthfinding doesn't factor into it, the only end goal is "CBT". That also is the reason for all those wildly contradicting things you mention (and many others like it). It's the All Roads Lead To Rome approach, they say whatever's expedient to lead to the end goal/core message: their brand of CBT being the answer.

If you're British and you've watched Dominic Cummings' testimony, you got a demonstration of the same principle: he contradicted himself constantly, but that was because the end goal/core message was: I am the hero of this story because I devised Plan B.

Almost, but not quite. It's not an attempt, or a veiled admission of failure. In The Netherlands, redefining recovery is a core part of the CBT process. E.g. Hans Knoop in one paper from his thesis on Cognitive Behavioural Therapy for Chronic Fatigue Syndrome (that, btw, contains the word "perception" 69 times. The word "tennis" doesn't come up anywhere on the 137 pages, fancy that ) :



"The second clinical implication of the present study is that recovery is a construction. The percentage of recovered patients differed depending on the definition of recovery used. It is possible that a patient has another concept of recovery than the therapist. It is important that they jointly (re)formulate a definition which forms the objective of the treatment."


Hans Knoop, Gijs Bleijenberg, Marieke F.M. Gielissen, Jos W.M. van der Meer, Peter D. White. Psychotherapy and Psychosomatics 2007; 76: 171-176



So, basically, they coax and influence the patient into redefining the fixed meaning of the word recovery (which is: getting well again, regaining what was lost, in this case your health, and the ability to do the stuff you want), so they can later claim their treatment was succesful and led to recovery to people who read it as what the word actually means.


The article title is part of the framing as patients as too fussy, with a sort of built-in permission by "scientists" for condescension towards them. It's a pre-emptive strike to catch the unevitable patients that will report that the "treatment" didn't help them at all.


Note Judith Prins' comment in te article:
"As a result, it is often possible to achieve the set goals within six months. Are they completely cured? "We always say: stop comparing yourself to the past," says Judith Prins. ,“A lot can change in five years, everyone gets older. It's about what people want now."

In answer to the direct question "Are they completely cured?", she diverts to the condescending implication that patients compare themselves too much with the young vital foals they used to be in the long distant past of...er... 5 years ago. To say in answer that "everyone gets older", especially with this specific 5 year time frame mentioned, is completely ridiculous of course.

They basically say that CBT leads to recovery while also at the same time saying it doesn't. But given how this stuff works, like I explained to you earlier, this makes perfect sense, because the dual message that leads to their product CBT being the succesful answer is:

1. Patients are too fussy and it's ok to ignore their complaints. Our CBT works
2. It's completely reasonable that we move the goal posts, as you can't really compare situations anyway. Also because point nr 1, you can't expect everything to réally get back to normal. Our CBT works

PS: Don't worry about typos. Your piece was clear and your energy is way more useful elsewere.

 

That part was, well, I wanted to say a particularly nasty bit of the article, but the whole thing is quite vile.

I didn't even read it as referring to "getting better will cost them money". That is usually not the approach here. What I find particularly heinous about it is the implication that patients are actually way better than they think they are, but because they are so invested in doing-the-illness-thing in order to convince medical officers that they are ill, they stand in the way of their own recovery.

One of the articles I'm researching for (not sure if it will get written, dependent on spoons and personal situation etc.) is about how the typical tactics used by domestic abusers are largely the same or similar as the ones used by the BPS lobby to gain and keep their dominance and control over ME/CFS patients.

An example that also relates to this particular issue is the description of how sadistic abuse works:

"[The abusers] do this by creating an abnormal situation, but one they usually seek to justify, and then wait for their victims to respond to that abnormal situation in a way that’s normal under those abnormal circumstances but abnormal from the wider cultural perspective, at which point sadists blame, denigrate, and belittle their victims for that abnormal, dysfunctional behavior."

In this case, the bps lobby has created the abnormal situation, the dismissive attitude of the medical examiner in the situation of serious physical illness, under the justification that it is in the best interest of the patients. Then the patients respond to the abnormal situation of having their serious and real physical illness questioned and disbelieved, usually (and logically) by trying to explain how bad it is and pointing out the worst parts in an effort to make the medical examiner understand that this is definitely real and a big problem. From the wider cultural perspective that is a hallmark of hypochondria, especially when the patient is a woman, and even more so because the BPS lobby has primed the surroundings to be on the lookout for it (like by this article). Which then becomes a justification to "blame, denigrate and belittle" the patient for that "abnormal, dysfunctional" behaviour. It's a set-up. The fact that patients say they are physically ill becomes a justification for considering them not physically ill but more so mentally.

In the past I've been stuck in this cycle, it's truly diabolical. You can't figure out what you're doing wrong, what you must do to make them understand the situation, all the while unconscioulsy confirming all the worst prejudices about you because you're trying to make it work.

Here's the whole bit from the article:

The word "furthermore" is doing a lot of nasty work. It confirms their earlier statement that those benefit applicants are basically one of three groups of ME/CFS patients:

-Those who insist they are ill
-Those who do too much
-Those who do too little

You know, so they've got all their bases covered. Remember my previous post: All Roads Lead To CBT

Basically the only "good" patient is the one that doesn't insist they are ill and has the exact schedule of activity they approve of. Hey, whaddayaknow, I just described their therapy!

 

And taste. I don't like zucchini soup. I do like zucchini bread, howver.